Support thread for all parents with reflux babies...

[PosieParker]

Just thought a pooling of ideas would be useful. Any ideas about meds, symptoms, coping strategies, things to make a baby quiet!!

Symptoms:

Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Little sleep
Constant crying/screaming

(please add)

Meds:

My memory is a little rose on this and I can't remember

Coping

SWING,
pushchair walks
accepting help
Sometimes putting your baby somewhere you can't hear them whilst you have a large gin cup of tea.

Quick post, re. delayed gastric emptying, yes, this can definitely cause abdominal pain. There are other treatments for gastroparesis (med name for DGE) other than domperidone - namely, a course of low-dose erythromycin which is of course an antibiotic but has the side-effect of propelling everything through the digestive system faster. There are also medicines like cisapride but these aren't used often because of their alarming side-effect profile.

About the refusing bottles/ feeds because of an association with pain - yes, very possible, and is a common finding with severe reflux. If there's a feeding aversion, then it's imperative that infant feeding specialists are involved -e.g., a speech and language therapist who specialises in infant feeding.

Feeding better when sleepy/ asleep is also very common with reflux - even fully medicated DS will only really drink milk before naps/ sleep.

To all of you struggling along with this - and I know this will seem like a lifetime away - but it generally does get better as the months go by. I thought we were in it for the long haul with DS but at 9 months old he is about a hundred times better and happier than he was just 4 months ago.

hellitops - here is a link to some useful info on dysphagia in children - www.lpch.org/DiseaseHealthInfo/HealthLibrary/digest/dysphagi.html
I'm sorry, I don't know about the link between the birthmark and painful feeding but it may well be worth looking into, maybe it causes him pain in certain feeding positions hence the fussing/crying (I'm probably talking rubbish here :))

narmada - thank you for clarifying about the DGE and additional info. I'll look into it again for dd as a lot of DGE's symptoms match hers and will discuss with her paed at the next appointment which unfortunately is not till 2 Sept so in the meantime we've got to struggle through as I don't think GP/HV will be of any help! :(

Elp please I am driving myself mad. DD 9 weeks is on ranitidine, she seems a little more comfortable than she did but has massive trouble sleeping - she will only go to sleep on my breast and then 10 mins later she makes a noise like being sick then needs milk again. It's like she is using the milk to get rid of the sick and comfort feeding. Has anyone else experienced this? Any ideas what to do as neither of us have had any sleep all weekend and gp appointment in the morning but frankly they are rubbish.

Happened to me. I had to try and establish a bit of a pattern with my LO as she wanted the boob all the time, 20 or more times a day! I was glued to the sofa. If i put her down she screamed & it hardly ever felt like she had a proper feed. She feel asleep nearly every time she latched on within a minute or two as she was exhausted. I ensured she got fed between 8 - 12 times in a day, enough wet & dirty nappies etc & used a dummy if I thought it was for comfort.
Poor wee mite was making reflux worse for herself as my supply was HUGE & then I would get very engorged and have forceful let downs, esp as she was sleeping longer stretches at night through sheer exhaustion!
Things didn't improve on this front until we went on to Omeprazole (or Lanzoprazole - Narmada would recommend this as easier to administer) which is an acid inhibitor, stops that little flush you hear hurting as much, hence less comfort feeding.
Prob need to thicken things up in the tummy too with a little Carobel, helps it to stay in better in first place. Bit of a faff to give when you are BFing but worth it if it works.
Speak to the GP very seriously about the medication as if you want to continue BFing this needs sorted, if your situation is anything like mine was being stuck in the one place all day did not seem sustainable and I gave up after some very poor advice from my HV! I thought I could manage the feeds a little better by bottle. Turns out she still took around an hour for a bottle, if she wasn't feed refusing, hassle with sterilising and many other issues besides.
Good luck with GP, hope that helped.

Ps. She didn't sleep a wink during day unless attached to me. Night times were a real ordeal trying to get her down into Moses basket normally took at least 45 mins of bouncing on my pilates ball or marching up and down in the dark before laying down very gently. Normally worked on the third attempt. I didn't manage to have one dinner without her lying on me or feeding until she was around the 10 week mark, around the Omeprazole time!

Thanks Yogamummy- that's exactly the same as my DD. I am pretty determined to carry on bf if I can but gp attitude this morning was did I think it was time to go to formula! Err no... I did get domperidone though - one of my nct group is a paediatrician and said to get this with the ranitidine and give it 2 weeks. GP agreed to do a paed referral in 2 weeks if not fully working or she is not maintaining her percentile.

My supply is also huge - she doesn't really suck any more - just opens her mouth and it flows in! She also won't take a dummy! Arghhh but then she smiles at me..

It gets better though with the right medication?

bubandbump, re the huge supply - you might actually have a milk oversupply which could be contributing to the problems. It can cause vomiting and fussiness in babies - see this link .

Bubandbump I need help for the night comfort feeding, though quite not as bad.

My LO is 8 months now and used to comfort feed quite a lot in the evening and the second half of the night. He'd stay attached to my boob quite a lot and is off the top of the weight chart :( Thankfully he's quite tall too so it's not too much of a worry. He's just got worse at night again since cutting down to three day feeds, so if anyone has any ideas?

He doesn't finish his daytime bottles and doesn't seem to want more milk during the day so I wouldn't mind one or two night feeds (we'd finally got down to that a fortnight ago). Last night there were four feeds and five more wakings that I managed to settle without feeds. He spends a lot of the night sleeping in his pushchair. He won't stay on his wedge anymore but sleeps a lot better at 30 degrees. The cot is on blocks but it's not enough.

We've got a dietician now who has been very helpful. I expressed all his feeds a fortnight ago and she was able to tell me that he definitely wasn't overfeeding then. He's gone and got worse the last two nights though. The dietician just suggested more solids and I went and tried Enfamil at bedtime, which resulted in an hour's screaming. I was forgetting that my LO is backwards and has his best nights when he eats less solids. I've sometimes wondered if my LO has delayed gastric emptying, but I don't think that can be the case as food goes right through him in less than 12 hours?

Sorry Bubandbump I meant not as bad as in it sounds like you're getting less sleep rather than anything to do with the amount of milk drunk. I'm just worrying a bit about overfeeding now my LO is 8 months (though I'm probably being silly in this anyway, just I have quite a big baby :) )

Hi all, I finally got given baby gaviscon although not sure its right for my girl but giving it a few days and will see. Hv said not to hve it cos I'm bf and gp said well she wants to start in that first before going straight on anything else. I'm just confused, gp said 2oz of formula mixed wiv a sachet will be ok and then continue breastfeeding but I read instructions as u have to haVe no less than 4oz of formula so I don't know what to do, I expressed some but not a lot and mixed it wiv that but can Anyone tell me how much I shld express to mix it correctly. Broke down in tears cos I don't know what I'm doing.

Sorry to see that u guys are struggling too, it is so hard and I'm sure like me u feel helpless so hard for us parents. I dont really have advice as I'm new to this reflux but Im pleased I found this thread for support and to know I'm not alone. I'll try my best to help or advise

Hi all. Just wanted to post an update following our trip to see gastric specialist at great ormond st. Firstly he was absolutely lovely man really reassuring. Well his diagnosis is J has classic CMPI. He says he sees stories like mine time and time again where GPs prescribe antireflx meds without just trying a simple formula change.

J is currently on nutramigen, losec and domperidone. The plan is to stick with current treatment before trying to wean her off meds. Consultant has an inclination that J may need neocate instead of nutramigen as her poo has started to get a bit runny in the last few days (she has been on nutramigen for 2.5 weeks). He says it's important to change to neocate soon if necessary as unlikely J will take it after 4-5 months and she is now 13 weeks. Once we have settled on formula we then need to start weaning off domperidone and then losec. He said that one of the side effects of losec is that is produces stomach stretch which can help symptoms of reflux associated with cmpi. He said some babies don't take very well to sudden stopage and therefore we will need to wean her off in 6-8 weeks.

I'm feeling relieved we have a diagnosis and way forward but am also irked that the GP didn't just change formula first off. I feel guilty that I've been plying my DD with drugs perhaps unnecessarily. The benefit of hindsight. Just annoyed as I raised the possibility of cmpi at Js 6 week check up. GP said no as she didn't have rash. Consultant said they often don't have rashes and the key give away it is cmpi is 1- there was a disparity between when the vomiting started (from birth) and when the pain started (from 4-5 weeks), 2- mucus in poo, gassy tummy and very windy baby and 3- the instant discomfort from feeding and gurgling in tummy as the milk hit the stomach.

Will keep you posted as to how we continue with our journey.

Good luck to everyone else

Daisy good to hear from you. I hope the plan works well. I would hazard from what you have said that my LO is not CMPI as she has had reflux from the day and hour she came out of hospital!
What is stomach stretch associated with Losec?

Narmada thanks for the useful link, I have bf her sitting up this evening and while I can see the reflux is still there, we have just had a 5 hour stretch of sleep! Also makes it easier to keep her upright after a feed as she normally arches herself to make it really hard to get her off my boob.

Birchykel, re Gaviscon, I used to mix it with 5-10ml of breast milk or hot water and give it in a bottle. We are lucky that DD will eat anything you put in her mouth though - she even seems to like the ranitidine!

Daisylulu, that's really interesting re cmpi as the timing is exactly the same as DD and she also developed dry skiN patches around the same time. I have been dairy free now for over a week (bourbon anyone?) and it initially seemed to really help then went backwards but has the same symptoms described. I know it can take 3 weeks though so fingers crossed..what is the consultants name and how did you get the referral? I am going to push for a referral in 2 weeks whether or not the meeds are working and she is covered under my private health cover so could possibly have more choice.

I know this one has probably been done (but this thread is now so long) but what schedule have people found most effective to administer the ranitidine and the domperodone?

Thank god for mumsnet and all you lovely posters!!

Hi all, quick post. Spoke to A's consultant this morning and she is being admitted to hospital today for 48 hours for observation. He has also agreed to put her on Omeprazole as well so we are crossing our fingers that this helps with her pain when feeding ( although I can see from other mum's that this hasn't helped ). I know it can take a couple of weeks for these meds to start to have an effect so I am keeping my fingers crossed and going to take each day as it comes.
The consultant has also arranged for the Dietician to visit her on the ward tomorrow ( we had an appointment for Friday anyway ).

Thank you to everybody who has given advice and support. It has been so comforting.

Daisylulu good luck with the neocate - my lo took to it ok ( when she's not screaming in pain when feeding ) and I think this is because she was only 9 weeks when she started with it. The paed said if they start on it later on then they tend to reject it because of the taste. It does smell vile as well. I also found that when we are having a good day she will take it better when it's really warm - if we give it to her when it's getting cooler she will reject it.

Anyway I will let you all know how we get on. Best go and pack our bags!!

Good luck sbeth hope you get some answers that you need soon.

Bupaandbump I saw Keith Lindley privately at Great Ormond St. He was recommended on the littlerefluxers forum. I would definitely recommend him. The GPs really made me feel like I was being over the top but having seen him I was reassured that I did the right thing by getting a referral. We are lucky as J has private medical insurance too. I got an appointment by ringing Dr Lindley's private secretary (you will find by googling via GOSH's website or I can send to you) and she then said I just needed to get GP to send a fax with J's symptoms and meds to date. By going private you will get an appointment very quickly - they actually had one the next day but I decided to wait 10 days to allow the nutragimen to take effect. I got the GP to write the referral by simply phoning the surgery and telling the receptionist that the GP needed to send the referral ASAP. It worked! :) and I bypassed the awkwardness of having to deal with GP face to face.

Re ranitidine and domperidone, I gave to my DD at alternate feeds and made sure it was 20-30 mins before a feed. I think the domperidone is the more time critical one.

Yoga tbh didnt go into loads of detail about stomach stretch but it came up when I asked him why losec would have helped J's reflux symptoms if she only has CMPI. He said its because it has other side effects one of which is that it makes the tummy 'stretch' and this can help alleviate some of the reflux type symptoms without actually taking away the pain caused by the intolerance to the milk. Hope that makes sense! How is your DD getting on now?

Hi daisy, thanks for the tip on your post. I think C might also have CMPI, my guy has suggested that we start on Aptamil Pepti. Not sure why he's gone for that one, he seemed to think it was in supermarkets but it seems to be only prescription. I'll give it a go but C sounds so similar to J.

Aptamil Pepti is on prescription - it's the most palatable hydrolysate by far IME!

Thank you narmada I really appreciate all the advice.

Hi everybody, quick update, especially for milamum re the dysphagia. A was admitted yesterday afternoon. First feed she had was a nightmare, and both the doctors and the nurses have now seen her in action. The registrar came to see her and believes she has quite severe silent reflux. Been put on domperidone and was supposed to start on omeprazole but then they realised the dose she was on for the ranit was very low so this has been doubled and I have been promised that if there is no improvement by tomorrow then she can have the omeprazole ( they also said that as the pharmacy was closed last night they wouldn't have been able to start her on it straight away ).
Consultant has been to see her this morning and he now thinks she does not have the cmpi, due to the fact that there has been no change to her symptoms in the 5 weeks she has been on it as most children normally show improvement within 2 weeks. He is also concerned by her pain when feeding, particularly when I mentioned the choking and the fact that it seems to hurt her to actually swallow something, and also the fact she will only feed well when very sleepy. He checked to see if there was any cleft palate they may have missed but there isn't. He wants her to have a barium swallow ( will probably be tomorrow now ) so he can assess her properly.
Dietician has been and she also agrees A probably does not have cmpi and wants to switch her to a high calorie formula ( SMA High Energy ) - if she reacts to this she can go back on the neocate. She also wants to have her assessed by a Pediatric Speech and Language therapist, but she is on holiday this week, so can't be seen until Monday, and then A to attend a feeding clinic from August. Consultant also agrees that she may have developed some feeding aversion as well.
I have been sent home to get some rest and it feels very strange not having a baby here. Hopefully we are getting somewhere now.
Will keep you updated.

hello everyone

we have not had a fun time here either. Went to A&E on monday night as the birthmark was really sore due to the ulceration and we'd had enough. Got our paed appointment moved to Tues, which was lucky as we had to be admitted overnight due to completely refusing feeds (went 14 hours without poor baby :( ). He's on a drug therapy for his birthmark, should start seeing results of shrinkage after about a month -unfortunately though there are quite a few possible side affects to it so we have to keep an eye on him (very runny poos at the mo) and has a cream to sort the sore out, which seems to be working.

The docs and nurses on the ward were brill and very reassuring. They used their calculation of 150ml x weight in kg/24 to work out a rough guide to how much he should be eating and he's generally been doing 10oz less a day for about 2 weeks now. So I was right in saying he wasn't happy only managing 20oz a day. Was a bit shocked when they weighed him Mon night and Tues morning as he hadn't put any weight on since last weighed. Weighed him today and he's put 2 1/2 ozs on. HV didn't seem that concerned....

Changing the bottles has helped and so far in the last 3-4 days he hasn't really had any crying feeds...he just doesn't eat a lot or goes longer periods between -aversion to feeding? I, however, still wonder if something else is going on inside to cause problems.

daisylulu do you have more info about CMPI? I'm starting to think that DS doesn't have reflux after all and I wasn't sure about CMPI as he doesn't tend to vomit or have bowel movement problems, but he has always been a trumpy and burby (sp?) baby, but around the 4-6week mark the passing of wind often became loud/eplosive and/or painful, with him often crying in pain and whatnot afterwards. I think he may have the gurgle you mentioned -often as you feed him you hear noises, like a gurgle/rumble coming from his tummy area. I'm not sure about skin issues; he does seem to have developed some dry skin in the last few weeks but whether that's Johnson's baby products or not I don't know. Someone mentioned 'watery eye' in response to CMPI and he also seems to have eye(s) that water at random moments every now and again, but that could be because of a 'blocked tear duct'/sticky eye he has as well.

we're going back into hospital tomorrow as part of his drug therapy and I'm thinking of asking about it. He doesn't seem to be having trouble physically eating at the moment (or at least there's no crying or fussing) but he's already gone back to not having 5/6oz at every/most feeds but that might be adjusting to the meds. I'd like to try and sort it out whatever it is sooner rather than later, especially if it is CMPI as I guess that will have an effect on weaning and he foods I can give him etc. I'd rather not cause pain or give drugs where I don't need to.

sbeth I bet it is really strange not having your LO with you but it sounds like they really want to get to the bottom of what is going on, which is really good. My HV told me to give DS vitamin drops if I didn't think he was eating enough.... Fingers crossed they work out what it is soon. I'm sure you'll give her lots of hugs and cuddles when you go back in to see her. Good luck and keep us posted

p.s sorry for the essay again :(

hi "sbeth1976", it must be hard leaving your dd at the hospital but hopefully you will now find out what exactly is wrong and get it sorted out, which would be brilliant. I hope you get Omeprazole, it worked very well for my dd in terms of stopping her reflux symptoms but unfortunatly not the feeding refusal! :( My Consultant doesn't think there is anything wrong with dd (well, apart from her having "just reflux"!) and so completely ignores whatever I tell him about how difficult/impossible she is to feed, he just keeps referring to that fact she's been gaining weight and is not taking it in that it is only because I persevere so much and literally spend my days trying to feed her while she naps on me, then express bm and, when she is awake, give her a little emb or baby rice or cereal, it sometimes takes 40-50 mins to get a couple of oz into her! I managed to get an appointment with a Speech and Language Therapist who's coming round on Monday so am hoping she'll be able to offer some insight as to why dd is refusing to feed and whether it is a swallowing issue so that I can then push for some tests to confirm or rule it out. Please let us know how you get on with your tests and meds.

hellitops - re CMPI. I'm also wondering if my dd has it. She also doesn't have all the symptoms (i.e. no diarrhea or vomiting) but used to get a rash on her forehead and itchy red watery eyes during or straight after feedings. I went dairy and soy free in mid May and although her feeding problems didn't get better, the rash and itchy eyes occurred much less often. I've just restarted dairy 2 days ago and the rash and itchy eyes are back and also now dd has blood streaks in her poo which I understand is another symptom of cmpi so I'll be cutting out dairy and soy our of my diet again just in case.

Hi everyone. So sorry to hear of the ongoing issues I know how heartbreaking it is.

I've got to make this relatively quick but wanted to post a bit more about my experience of CMPI and what I have read. Firstly would recommend colic solved by Bryan Vartabedian I got it off amazon for a fiver and although it is American it's still relevant for UK audience. It goes into loads of detail about reflux (it's not about colic- it basically says there's no such thing ad colic!) and has a whole chapter specifically on cmpi.

Right symptoms of cmpi;

• feeding refusal
• pain when feeding
• unexplained irritability of any kind (according to Bryan)
• blood in stools - whether or not you see it. Could be microscopic
• mucus in stools
• Eczema (tho my LO has hardly any dry skin although does have a slight red bottom)
• wheezing and nasal congestion
• diarrhea
• cramping and fussy disposition
• crying and or pulling up knees during bowel movement despite soft stools.

As for us, I think we def need to go onto neocate. J has very runny poo, farting lots again and has been sneezing lots. She is still feeding very well but I want to move her before she starts getting in pain or refuses to feeds.

Oh and I should also add we have a history of dairy intolerance and eczema in our family. I for one can't eat cream and get eczema from time to time. J also had horrendous farts and explosive poo when on aptamil. I only saw mucus in her poo once. She also gets watery eyes from time to time. She used to take over an hour to eat 3-4 oz with obvious discomfort. Now happily drains 6-8oz in under 20 mins- I honestly thought that would be an impossibility based on how she used to feed- it was horrendous and I used to feel like I was poisoning her. When I said that to the consultant he said that's because that's exactly what I was doing

Hi all,

I hope everyone's OK. I wanted to ask some advice from other mums with reflux babies, especially those who are or were challenging to feed or had feeding refusals/aversions, with regards to their babies routine. I started out with bf dd on demand but as dd's feeding issues developed and she pretty much stopped giving hunger cues, I am kind of feeding her very erratically at the moment mainly around her nap times so usually her feed times are right before her naps or during (I'll try to feed her a little before the nap from a spoon when she is awake and then typically top up with a bf when she's asleep during a nap). It's not working great as I am constantly feeding or pumping!

I'm thinking that having a more structured routine where I feed her (or try to!) after her naps may help a little so wanted to see if there were others out there who was able to put their reflux babies on a feeding routine successfully. DD is 4.5 months at the moment.

Many thanks.

Hi milamum.

We are on a routine- at times it's not been easy but then I don't think trying to feed a reflux baby will ever be easy whether on demand or routine based. We stuck to a routine as personally I found it easier to keep track and compare how the feeds went.

Our routine goes roughly like this - 6.30am, 10.30am, 2.30pm, pre-bath bottle at 5.30pm, post bath bottle at 6.15pm and dreamfeed at 10pm (which she doesn't always want). We've been doing this since she was a few weeks old and it's worked quite well with generally only one night feed needed - which since being on nutramigen she's dropped. Putting it in black and White makes it sounds easier than it is. On the really bad reflux days where she was totally refusing feeds I would break the routine and feed little and often- maybe every 2-3 hours - as it was the only way I could get food into her.

Afm J has mucus in her poo today so I am insisting a change to neocate on Monday. I'm really hoping I don't get grief with this from gp. Can't remember if I said in my previous post that gps don't like to prescribe because ofcost. Consultant is writing to gp to say that's what she needs but not sure when that letter will get there...